The Good Side of Social Media
After being told I would be getting a loop ileostomy I felt a lot of fear. I don’t do well with blood or medical-type things so I had no idea how I’d be able to care for a stoma. I had no clue what to expect, I had never seen one before or met someone around my age with one. After I left the doctor’s office my phone must have been listening because I started getting “ostomate” videos on my socials. One came up on YouTube, another on Instagram. These creators were sharing their experience and normalizing having an ostomy bag, some even going as far as changing the bag on camera. I can’t lie, I couldn’t bring myself to watch it at first. They give a warning before just showing an exposed stoma so it took me a few times before actually watching the whole video. The way they talked about it was so empowering, saying things like, “I’m thankful for my stoma it saved my life” or “this allows me to live a full life”. I would learn, through social media, that people have stomas for all sorts of reasons - ulcerative colitis, crohn’s disease, IBS, there are lots of gut-related issues that can lead to having a stoma. It felt like they were normalizing it, it made me feel like there are tons of people with stomas walking around and it’s completely fine to have one. Ultimately it made my transition to having one a lot smoother than it could have been. I saw these creators, people around my age, and they were living with this stoma and making it work.
My knee jerk reaction when being told I would need a stoma was that it was disgusting. It was dirty and gross and should be hidden, no one needs to or should know about it because it’s private. But seeing these people openly talking about it, showing their life online to try to normalize it, it was extremely freeing. When I saw my stoma for the first time I was really freaked out, seeing an organ stitched to the outside of you is jarring. But then I had this thought that I would only need this for 10ish months and there are people younger than me with permanent stomas, it felt like I was being rude to them if I didn’t accept having one. Genuinely in my mind I would think “This is not gross, there are people that have to live with this their whole lives and it’s rude of me to think this is gross.” The people I was watching online were sharing their experience in order to combat the stigma and me thinking it’s gross only fueled it. The people I followed were mothers, business men and woman, young adults, athletes and models. These were real human beings that were living normal lives, just with an ostomy bag attached to their abdomen.
This is where I think social media is helpful. It gave me a community of people who were going through something similar and made me feel less alone. It can bring people together and give a group of people a platform to spread helpful information that wouldn’t be as socially acceptable to bring up anywhere else.